Teaching this literally over the last few days has made me realise how imperfect these ‘rights’ are, or at least appear. Achingly sad cases such as those involving Charlie Gard and Alfie Evans have profiled the uncomfortable position when morality tangles with the law and, certainly insofar as the rights of the child are concerned, it can lead to a very awkward result.
Little Charlie Gard was a desperately ill wee lad. Not long after his birth he was diagnosed with the terminal condition mitochondrial DNA depletion syndrome. By early 2017 he required artificial ventilation and the medics at Great Ormond Street Hospital (GOSH) applied to the High Court for the lawful removal of the ventilation , having reached the incredibly difficult decision that not to do so would not be in ‘the child’s best interests’. Despite being an English case, the appropriate starting point for us is to be found in The Children’s (S) Act 1995. The legislation in itself marked a seminal point in the enhancement of existing law and centred on the care of children in Scotland. It focussed, primarily, on the needs of children and their families and defined both children’s rights together with, crucially, both rights and responsibilities of their parents.
In support of six main principles, there are three main themes that run throughout the legislation, viz.:
a) the welfare of the child is the paramount consideration when his or needs are considered by courts and children’s hearings
b) no court should make an Order relating to a child……….unless….to do so would be better….than making no Order
c) the child’s views should be taken into account where major decisions are to be made about his or her future
In respect of (a), above, it can doubtless not be argued that GOSH had anything other than Charlie’s ‘best interests’ at heart when they made their application. It was therefore his welfare that was their paramount consideration when reaching the decision that they did. In the High Court, Mr. Justice Francis said that any decision he reached would be subject to review should ‘new evidence’ emerge that suggested alternative/continuing treatment may be beneficial. The little lad’s parents returned to court in July to posit that their son may benefit from experimental treatment from a Professor Hirano from Colombia University in North America. However, it soon transpired that the potential treatment had never actually been performed on anyone similar, the individual concerned had never even seen Charlie Gard nor even read and examined his clinical notes. One can only imagine the frustration, exasperation and indeed sheer anger when this came to the knowledge of the doctors. Later in July, the parents dropped their request for continued treatment, but a further disagreement broke out as regards to the little boy’s palliative care ; his parents wanted it to be at home but the medics disagreed. The High Court ruled in favour of the medical team on 27th July. Charlie’s ventilator was removed and he passed away some 24 hours later.
The manner in which this entire farrago was drawn out was neither pretty nor was it conducted, it appears, with much dignity. The Vatican, Donald Trump and even Nigel Farage, amongst a plethora of other individuals from varying walks of life, all waded in to the debate with their comments, principally via social media, and there were overt rebukes aimed at the UK in relation to ‘parental rights’. Consider Farage’s tweet on 24th July…‘UK medical establishment closed ranks on #CharlieGard’s parents & the state took away their right. Change required. What a total disgrace…’
I see little justification for this comment. Under the law, it is surprisingly straightforward. When a patient (in this case a very young child) is not competent to make decisions for themselves, the decision must be made on their behalf and ‘in their best interests’. (Continued/alternative) treatment can only, therefore, be sanctioned if it serves those interests. In that sense, we mean ‘medical’ best interests, subject always to any ‘beliefs’ the patient has. However, even this appears somewhat anachronistic. Take the scenario of the Jehovah’s Witness who refuses a blood transfusion. Ordinarily, even if this would be in their best interests, it would likely not be given, in deference to their beliefs. However, this is evidently not an unfettered right. For a ‘child’, the power to both ‘give or withhold’ medical treatment would, ordinarily vest in the parents (subject to the possible issue of being ‘Gillick competent’, (discussed below)). Therefore, whilst judicial systems virtually the world over will give due cognisance to those rights, they are, arguably, not absolute. Parental rights, as we know are given on the strict understanding that they understand, appreciate and implement what is ‘best‘ for their children and to ensure their ‘health and wellbeing’. Further, one could argue that Articles 3,6 and 24 of the UNCRC apply across the board and certainly in ‘medical’ issues.
In the case of young Charlie Gard, the medical team at Great Ormond Street were firmly of the belief that continuing treatment would not have been in his ‘best interests’. It would, if you like, serve ‘no medical purpose’. The young boy’s medical condition was not going to improve. Indeed, one can go further – being on a ventilator is extremely invasive in itself and unless it serves something of a greater purpose (for example, such as a chance for the body to fight/dispel infection/virus as we can see currently with COVID-19 – and recover), then that is in itself is a reason for it to be withdrawn. Little Charlie was not going to recover and merely being ‘kept alive’ is insufficient, as cruel as that may sound.
Quite inaccurately as has been suggested, this was not a case of euthanasia. That requires a distinct element of intent to end life, either by the administration of some ‘act’ or the withdrawal of treatment. Using the legal (almost delictual) element of ‘foreseeability’ that a life will terminate when treatment is withdrawn (for reasons that effectively constitutes acts that would no longer be in the ‘best interests’ of a child) is not the same. It is my contention, however controversial and possibly unpalatable, that continuing an individual’s life ‘for the sake of continuing life’ is morally and ethically wrong, notwithstanding the very compelling reasons often so to do. Here, one would clearly have the compassion to acknowledge the desperate plight of the parents and who perhaps realise that their own view on the whole scenario was very understandably blighted by the heartache of not having more time for them to say their goodbyes to their son. But I would contend that that is insufficient for continuing to keep him alive.
Furthermore, in the wider sense of the very concept of ‘parental autonomy’, as I have suggested, it is not without limitations. It is the best interests of the child that take precedence over the rights of the parents. The paradox to consider is whether we simply accept that any decision or act by a parent on behalf of their child is always ‘in the best interests’ of that child. But to do so would evidently be preposterous. Perhaps we should concentrate more on the duties and responsibilities of parents, as evidenced by existing legislation and UN charters and less on their rights, certainly insofar as these incredibly difficult medical issues are concerned. That is not to infer that they should not have a view. As parents, naturally they should and always will – but can people in a similar position possibly be ‘so close to the elephant all they can see is grey’?
An interesting side issue, although still closely connected to that of ‘medical consent’ is the ever so slightly awkward scenario created as a result of the House of Lords decision in Gillick v West Norfolk and Wisbech Area Health Authority (1985) 3 All E.R. 402. In this seminally important case and seismic judgement, Victoria Gillick’s daughter blew asunder the hitherto unchartered waters canvassing a child’s ‘ability’ to consent to medical treatment. The holding in this case was that a child under 16 could, in exceptional circumstances consent to medical treatment , provided that they had reached a suitable and sufficient level of understanding and were intelligent and mature enough to realise what was being proposed. Quite how subjective that is remains a matter of debate, The concept of being ‘Gillick competent’ was therefore born and it is hard to imagine a more dramatic case in recent times in connection to children’s ‘rights’. The case is perhaps even more remarkable given that life, and society generally 36 years ago, was very different from today.
Both the significance and importance of this case is that the right to consent to medical treatment previously vested solely in a parent/(s) until a young person’s 16th birthday. Despite being a House of Lords case, the outcome was somewhat speculative and unclear as regards the law in Scotland. However, the issue was somewhat immaterial as s2(4) of the Age of Legal Capacity (S) Act 1991 clarified the position from a legislative perspective and states the position which was effectively the same as per the judgement in Gillick. It is rather less clear on the subject of the refusal of treatment rather than consent.
I raise Gillick only to further pour some scorn on the issue of ‘parental rights’. It strikes me that in terms of rights these are exercised in relation to issues such as ‘contact’ and the ability to provide ‘guidance and direction’ but perhaps no longer the ‘right’ over issues such as medical treatment. It further may appear to throw doubt on whether there are any actual rights of parents at all vis a vis medical issues, in light of both Gillick and s2(4). There was dissent in Gillick between Lords Scarman and Fraser to the extent that the latter has given rise to the ‘Fraser guidelines’ which have perhaps thrown even more confusion rather than clarity on the issue. The Fraser guidelines take the view that in determining whether a child is competent to consenting to treatment , the administering Doctor should still require to be satisfied that it is in the child’s ‘best interests’. This is at variance with Lord Scarman who made no such requirement in relation to ‘best interests’ and the statutory equivalent in Scotland (the s2(4)) would tend to be supportive of him.
The issue of the often uncomfortable juxtaposition of the rights of the child cross-matched with the rights (and perhaps more significantly the responsibilities of parents) is as fascinating as it is confusing and, on occasion, perhaps simply unclear.
One wonders where we will be as far as ‘rights’ are concerned in even a decade.